Trying to get back to Normal

This week was all about getting back into our routine.

Last Sunday we were able to make it to church for the first time in a month. Church feels safe and like home to both Alex and I. It was a good first outing for him. A Place where he is accepted exactly as he is. A place where everyone is happy to see him. A place where it is okay to be even if he isn't 100%. he enjoyed seeing friends, but was so wiped out and pale after the hour.

Monday was super busy for the girls. Maddy was back to dance. I can't tell you how much I love having a little girl who shares my love of dance. She is leaping and twirling all over the house ALL OF THE TIME! She loves her class and her teachers. I am constantly amazed watching her and thinking back to the little girl who couldn't crawl and who never beared weight until she was 18 months old. She has come so far with that little determined spirit!
Monday was also my first day of work. I was able to get set up and begin my training which continued all week. I finished off the day with my monthly meeting at the hospital for the Family Advisory Council.

Tuesday was Mad's first day back at school and boy were we ready! Maddy was excited, but the rest of us were equally excited as she was making us crazy! I cannot rave enough about her preschool. She feels loved and enjoys the learning, the creativity, the social time, everything.

Wednesday we started off the morning seeing our pediatrician to fill him in on Alex's hospitalizations and surgeries. He was happy with how Alex was doing overall and in agreement with our treatment plan regarding the relentless pancreatitis that we cannot clear! Alex also went back to acting. I was proud of him for going despite still not feeling great.

Thursday the kids both saw hematology for their six month check up. Overall they are both doing well in this arena and it was a pretty easy appointment. Thursday night Alex went to his first Improv class and LOVED it. I was so happy to see the big grin and hear the laughter in his voice that we haven't seen very often over the past few months. he cannot wait till next week to go back again.

Friday we had two more appointments to finish out the week. Not much to report from these.

Medically we are kind of stuck right now. Alex has recovered nicely from his surgeries. He is completely over his infection that brought us into the hospital in the first place. Unfortunately, the stress of what his body went through left him with the most persistant case of Pancreatitis we have dealt with in years. He hurts, he is nauseous, he is tired. It is hard to feel cruddy all the time and see no end in sight. We had attempted to reintroduce Feeds (pedialyte at 10-20 cc/hr) late last week. However, his pain and nausea increased and his lipase went up 400 points to almost a 1000 (should be under 70). So we had to stop again. This leaves him hooked up to IV fluids close to 24 hours a day. We are anxious for him to get back to his baseline and hopefully even better soon!

Sassy Girl heading to Dance

So excited to head to school

Always Joyful

His sweet Zoey keeps him company when he doesn't feel good.

Thank you to everyone who has continued to keep us in your thoughts and prayers. We continue to ask for prayers for Bruce to find the perfect job and for Alex to feel better.

Ali